Social and Behavioral Sciences Commons^™

Experiences Of Working Sandwich Generation Caregivers, Kimberly Ben, Susan Macdermott

Spring 2024 Virtual OTD Capstone Symposium

This poster presents an insightful exploration into the lives of Working Sandwich Generation Caregivers (WSCs), a group defined as individuals aged 30-65 who simultaneously provide care for both aging adults (over 65 years old) and younger dependents (29 years old or younger), while also managing their careers. The study delves deep into the unique challenges and experiences faced by WSCs, aiming to highlight the occupational, emotional, and physical demands inherent in their roles. Through qualitative research methods, including interviews and occupational therapy assessments, the manuscript offers a comprehensive look at the balancing act WSCs perform daily. It seeks to inform …

Editorial: Resilience, Quality Of Life And Psychosocial Outcomes Of Cancer Patients And Their Caregivers, Nida Zahid, Nargis Asad, Ashraf El-Metwally

Department of Surgery

No abstract provided.

(In)Dependence, Socio-Sexual Relationships, And Sexual Health Among Adults With Mild Intellectual Disability (Mid): A Critical, Qualitative Exploration, Vanessa L.E. Cox Ms

Electronic Thesis and Dissertation Repository

The purpose of this critical, qualitative study was to explore how adults with mild intellectual disability navigate independent socio-sexual relationships in settings where they are highly dependent upon caregivers and family members who exert significant control over most aspects of their lives. Data were gathered during one-on-one interviews conducted with adults with MID (n=15), and parental caregivers (n=6). Theoretical insights from critical disability studies and sexual citizenship were used to analyze the findings, which are presented thematically by study population. Participants with MID faced challenges to establishing and maintaining meaningful relationships, including a lack of choice about where and how …

A Swimming Program For Children With Autism Spectrum Disorders: Assessing Critical Parameters From Caregivers’ Perspectives, Abir K. Bekhet, Norah Johnson, Tana Karenke, Amy Van Hecke

International Journal of Aquatic Research and Education

One in 54 individuals is diagnosed with autism spectrum disorders (ASD). Swimming can impact the physical and mental well-being of persons with ASD, which in turn may improve their caregivers’ well-being. The purpose of this qualitative evaluation study is to assess the necessity, acceptability, feasibility, fidelity, and beginning effectiveness of a 12-session swimming training program (STP) at an indoor university pool designed to teach persons with ASD how to swim, and to teach caregivers precautions for safety around water. Participants included 7 boys, and 3 girls with ASD [mean age 7.05 years (SD 1.17)] and their caregivers. Results indicated that …

Ambiguous Loss Feelings Amongst Caregivers Of Operation Enduring Freedom Veterans, Stephanie T. Spann

Walden Dissertations and Doctoral Studies

This quantitative study compares the possible relationship between ambiguous loss and the stress level of caregivers of Operation Enduring Freedom (OEF) veterans who served in combat. Injured servicemembers need caregivers to assist them in caring for their physical and mental health needs. This study examined whether there is a relationship between the perceived ambiguous loss among caregivers of OEF injured veterans and the stress level experienced by caregivers. The theoretical framework for this study is the ambiguous loss theory. The methodology used to test the hypothesis is a quantitative correlational design to compare ambiguous loss variables amongst caregivers of injured …

The Motivations And Work-Life Balance Of Paid Home-Based Caregivers Of Clients Experiencing Dementia, Cheraire Lyons

Walden Dissertations and Doctoral Studies

With an expected increase in demand for professional caregivers for the growing older adult and aging population, caregivers need balance in their lives so they can provide quality patient care. The purpose of this qualitative multiple case study was to explore what motivates paid, professional home-based caregivers of clients with dementia to maintain their work–life balance. The caregiver ambition framework was the guide for exploring home-based caregivers’ work life issues along with caregivers’ motivations for work–life enrichment. Interview data were collected from five interviews that were analyzed first manually by exploring the transcribed interviews for commonly seen words and phrases. …

Improving Caregiver Implementation Of Communication Supports For Young Children With Autism, Heather Coleman, Selena J. Layden, Lynda Gayle Horner

Communication Disorders & Special Education Faculty Publications

The use of evidence-based practices (EBPs) in the child's natural setting is critical for young children with autism spectrum disorder (ASD) to improve communication skills and promote generalization. Yet, to implement EBPs effectively, caregivers often require training. The purpose of this study is to explore the efficacy of behavior skills training (BST) to teach a caregiver to implement a parent-implemented discrete trial training (DTT) intervention in their home. Using a multiple baseline design, one caregiver was taught to implement the intervention focused on three verbal behavior operants. Results demonstrated a functional relation between the BST and caregiver implementation. This study …

Caregivers' Perceptions Of Covid-19 Educational Disruptions On Children With Developmental Language Disorder And Typically Developing Peers, Katherine Radville, Danika Pfeiffer, Karynn Sheranian, Julie Wolter, Jessie Ricketts, Tiffany L. Hogan

Communication Disorders & Special Education Faculty Publications

Purpose: Understanding the experiences of families of children with developmental language disorder (DLD) during COVID-19 educational disruptions is essential for designing responsive supports during pandemic recovery efforts and beyond. This qualitative study describes the experiences of families of first-and second-grade children with DLD during the pandemic as compared to the experiences of families of typically developing (TD) peers.

Method: A conventional content analysis approach was used to analyze caregivers’ written responses to open-ended questions regarding their perceptions of COVID-19 educational disruptions. Responses were analyzed separately by group: caregivers of children with DLD (n= 23) and caregivers of TD children (n= …

The Experiences Of Children With Neurological Conditions And Families, Charmaine Alexis Pasion, Jazminne Orozco Arteaga

Fall 2022 Virtual OTD Capstone Symposium

Children with chronic neurological conditions and their families experience various challenges that impact their quality of life and occupational participation as they reintegrate back into their communities (Dumas & Grajo, 2021; Taib et al., 2021). However, rehabilitation for children with chronic neurological conditions focuses on addressing functional impairments and self-care activities rather than transitioning home (Diener et al., 2021). Therefore, children and their families are in need of resources and interventions to address their occupational impact as they return to their occupations (Diener et al., 2021). This capstone research study explored the lived experiences of children with chronic neurological conditions …

Mental Health Professionals And Family Burden: Ways To Improve Training And Treatment, Johnnie Lee Jenkins, Iii

Walden Dissertations and Doctoral Studies

During deinstitutionalization, schizophrenia treatment shifted from state facilities to communities and families. This change stressed families. This study investigated mental health professionals' (MHPs) knowledge and training about this stress also called family burden (FB). The study had three research questions. These addressed MHPs’ view of FB, what barriers exist in treating FB, can multiple viewpoints define FB, and if these views influence MHPs to reduce it. This grounded theory study used 22 MHPs in seven focus groups (FGs). The participant recruitment process included email, list serves, phone calls, and one state conference. The participants were MHPs licensed for 3 years …

Effectiveness Of Wechat-Group-Based Parental Health Education In Preventing Unintentional Injuries Among Children Aged 0-3: Randomized Controlled Trial In Shanghai, Yuheng Feng, Xueqi Ma, Qi Zhang, Ruo Jiang, Jun Lu, Kaiyue Chen, Huiping Wang, Qinghua Xia, Jicui Zheng, Jingwei Xia, Xiaohong Li

Community & Environmental Health Faculty Publications

BACKGROUND: Unintentional injuries to children are a major public health problem. The online social media is a potential way to implement health education for caregivers in online communities. Using WeChat, a free and popular social media service in China, this study evaluated the effectiveness of social online community-based parental health education in preventing unintentional injuries in children aged 0-3.

METHODS: We recruited 365 parents from two community health centers in Shanghai and allocated them into intervention and control groups randomly. Follow-up lasted for one year. The intervention group received and followed their WeChat group and a WeChat official account for …

Concurrent Reporting Of Adverse Childhood Experiences Among Perspectives Of Adolescents And Caregivers., Katie J. Berghuis

Electronic Theses and Dissertations

The consequences of Adverse Childhood Experience (ACE) events in youth have predominantly been studied through retrospective studies that assess adults’ first 18 years of life or caregiver report of ACEs in youth. Reliance on only caregiver report to discern ACEs is a limitation amongst prior studies as research has found that caregivers tend to underestimate ACEs among their children, and there is even a greater discrepancy of reporting between caregivers and youth 12 years and older. Therefore, this study investigated concurrent reporting of self-report ACE scores in adolescents – defined in this study as 12 to 20 years old – …

Analysis Of Occupational Therapy’S Role To Promote Healthy Sleep Participation To Support Caregivers Of Children With Autism Spectrum Disorder, Sophia N. Roman

Student Capstone Papers

Children with autism spectrum disorder (ASD) face sleep disturbances. Healthy sleep habits are essential for children with ASD and their caregivers to properly engage in their everyday lives. Occupational therapists are trained to evaluate clients in areas that contribute to sleep dysfunction and to focus on promoting optimal sleep performance. There is limited research on caregivers’ perceptions of their child’s sleep disturbances, these disturbances’ influence on occupational engagement, and whether occupational therapists have collaborated with caregivers of children with ASD to treat this area of occupation. Collecting data from caregivers by using a questionnaire can provide occupational therapy (OT) practitioners …

The Effects Of Sociodemographic Characteristics, Caregiving Practice Patterns, Coping Mechanisms, And Social Support On The Health Of Asian American Ethnic Groups And Asian American Caregivers, Suryadewi Edi Nugraheni

Legacy Theses & Dissertations (2009 - 2024)

Background: Asian American family caregivers came from various ethnic groups with different sociodemographic characteristics and culturally specific values. However, cultural practices were often overlooked because researchers often combined all Asian Americans under one umbrella. Objective: The purpose of the study was two-fold. First, the study investigated the study sample of Asian Americans participating in the California Health Interview Survey (CHIS) 2009 comprised of multiple Asian American ethnic groups. By utilizing the study sample, the research aimed to investigate 1) the associations between caregiving and self-rated health (SRH) and hypertension and 2) the associations between heterogeneity of Asian American ethnic groups …

Family-Based Caregiving: Does Lumping Asian Americans Together Do More Harm Than Good?, Suryadewi E. Nugraheni, Julia F. Hastings

Journal of Social, Behavioral, and Health Sciences

Asian American family caregivers have gained increased attention due to the need to provide life-sustaining aid at home given the rising numbers of older adults. This article reflects upon caregiving-related research studies that have overlooked the circumstances Asian American caregivers bring to the home-care context. Policies written to address community needs tend to omit the social circumstances many Asian American caregivers must face when trying to take advantage of programs and services. For example, the eligibility requirements fail to recognize distinctive cultural values embedded within the caregiving processes. Further, most Asian American data is aggregated. Aggregating data by ethnicity limits …

Don't Miss These Patients! The Experience Of Working Full Time While Also Being A Caregiver, Debbie Conner, Alyncia Bowen

All Faculty and Staff Scholarship

The project sought to understand the experiences of working professionals who are also the caregiver for others with a health care issue. A caregiver in this research study is an individual who provides personal, financial, social, physical, and or psychological support from individuals other than themselves. It has believed that a significant number of professionals serve as a caregiver for individuals such as, but not limited to, a parent, partner, significant other, spouse or child.

Inclusion In Religion And Spirituality For Children With Special Needs, Mackinzie C. Weiss

Student Capstone Papers

The proposed vision of this capstone project will focus on using occupational therapy interventions to help a local church be more inclusive to children and families with special needs. This capstone project will partner with a pre-existing special needs program to develop evidence based volunteer training, implement a parent respite program, and introduce a movement based program.

“They Will Think We Are The Cancer Family”: Studying Patterns Of Cancer Disclosure And Communication Among Indian Immigrants In The United States, Kanan Mehta

USF Tampa Graduate Theses and Dissertations

Studies of Indian immigrants in Western countries show that the rates of cancer increase significantly within a generation in the host country. The negative social perceptions associated with health outcomes of cancer often perpetuate limited disclosure regarding the diagnosis of cancer among patients and families. This can result in disrupted communication in clinical settings, while causing increased stress among patients and caregivers. These findings demonstrate the need for studying lived experiences of cancer-related illness and its impacts on social relationships in the domestic and public sphere.

This study explored cancer disclosure and communication among Indian immigrants in the United States …

Experiences Of Parents And Caregivers Of Children With Disability On Community-Based Rehabilitation (Cbr) Services In Malaysia: A Qualitative Study, Haliza Hasan, Syed Mohamed Aljunid Syed Junid

Makara Journal of Health Research

Background: The rehabilitation program for disabled children is provided through community-based rehabilitation (CBR) services by an initiative of the Department of Social Welfare Malaysia. This long-term program needs commitment and compliance, which relates to the quality of services experienced by parents and caregivers. Thus, the purpose of this study was to explore the experiences of the parents and caregivers of disabled children on the CBR services. Methods: This qualitative study utilized in-depth interview sessions held from March to May 2015. Fifteen parents and caregivers who had disabled children participating in the CBR program were selected using a purposive …

Socioemotional Selectivity And Psychological Health In Amyotrophic Lateral Sclerosis Patients And Caregivers: A Longitudinal, Dyadic Analysis, Suzanne C. Segerstrom, Edward J. Kasarskis, David W. Fardo, Philip M. Westgate

Psychology Faculty Publications

Objective: Socioemotional selectivity theory predicts that as the end of life approaches, goals and resources that provide immediate, hedonic reward become more important than those that provide delayed rewards. This study tested whether these goal domains differentially affected psychological health in the context of marital dyads in which one partner had been diagnosed with amyotrophic lateral sclerosis (ALS), a life-limiting disease.

Design: ALS patients (N = 102) being treated in three multidisciplinary clinics and their spouses (N = 100) reported their loneliness, financial worry and psychological health every 3 months for up to 18 months.

Main …

The Effects Of A Dementia Simulation Experience On Attitudes Towards People With Dementia, Micah Huckabee

Health, Human Performance and Recreation Undergraduate Honors Theses

Introduction: The neurodegenerative effects of dementia resulting in cognitive and behavioral impairments is plausibly one of the reasons for a societal stigma towards individuals with dementia. Societal stigmas are associated with decreased life satisfaction, depressive symptoms, and decreased psychological well-being for stigmatized individuals. In an effort to improve attitudes towards individuals with dementia, this study utilized a dementia simulation to measure attitudinal changes after a dementia simulation. Methods: There were 33 participants in this study (13 male and 20 female) between the ages of 18 and 25. Participants completed a Dementia Attitudes Scale (DAS) survey, and then they dressed in …

Twelve Principles To Support Caregiver Engagement In Health Care Systems And Health Research, Kerry Kuluski, Kristina M. Kokorelias, Allie Peckham, Jodeme Goldhar, John Petrie, Carole Anne Alloway

Patient Experience Journal

Family and friend caregivers (i.e., unpaid carers) play a critical role in meeting the needs of people across various ages and illness circumstances. Caregiver experiences and expertise, which are currently overlooked, should be considered in practice (such as designing and evaluating services) and when designing and conducting research. In order to improve the quality of health care we need to understand how best to meaningfully engage caregivers in research, policy and program development to fill this important gap. Our study aimed to determine principles to support caregiver engagement in practice and research. A pan Canadian meeting brought together 48 stakeholders …

A Thematic Analysis Of Adults’ Reflection On Childhood Experiences Being Parented By An Adult With Mental Health Issues, Jennifer Luja, Meg O'Malley

Thinking Matters Symposium Archive

Children are impacted by their relationships with caregivers. The objective of this research was to develop awareness of the impact on children being cared for by caregivers with mental health issues by examining the experiences of individuals who had a caregiver with severe and persistent mental health issues during childhood. Researchers also gained insight on how social workers can be more supportive to children in these circumstances. The researchers conducted interviews with five participants, the recordings of which were then transcribed and coded to identify themes. Prevalent themes include critiques of available services, resiliency and challenges of family members as …

Coping Methods Of Caregivers Dealing With Patients Suffering From Geriatric Dementia, Blessing Baridakara Deemua

Walden Dissertations and Doctoral Studies

Dementia is a neurological disorder primarily diagnosed in the geriatric population. A problem for paid caregivers of patients diagnosed with stage-4 dementia is that they may experience caregiving stress while rendering care. However, there was no research that described the lived experiences of paid caregivers. Caregiving stress can be accompanied by behaviors or comorbid conditions and specific symptoms of stress can have a differential wellness impact. This phenomenological study explored the lived experiences of paid caregivers of patients with dementia through Vroom's expectancy theory. Data were gathered through interpretative interviews from a sample of 10 to 15 purposefully selected nursing …

Suicide Education To Support Caregivers In Their Abilities To Care For Suicidal Individuals, Cassandra Lipa

Doctor of Nursing Practice (DNP) Projects

Purpose: Suicide is a preventable act of lethality yet still remains a public health concern. Suicide can affect individuals from a variety of backgrounds and does not discriminate against age, gender, ethnicity, income, or occupation. Efforts to prevent suicide often focus on supporting the suicidal individual however there is a lack of available resources that focus on supporting those closest such as caregivers. Caregivers can play a pivotal role in their loved one’s trajectory towards recovery. The purpose of this project was to provide caregivers with a suicide toolkit that encompasses basic education, approaches to supporting a loved one who …

Lived Experiences Of Caregivers For Individuals With Serious Mental Illness In Rural Communities, Jennifer Way

Walden Dissertations and Doctoral Studies

More than ten million American adults live with a serious mental illness (SMI). Given the deinstitutionalization of psychiatric facilities, caregivers and family members are often needed to care for these individuals. Due to SMI individuals’ extensive needs, caregivers frequently face unique challenges and experiences. Although research has been conducted on caring for individuals with SMI, less information exists about the experiences of rural caregivers of SMI individuals. The purpose of this study was to fill this gap in research by exploring the lived experiences of caregivers of SMI individuals in rural areas with the intention of understanding this population’s unique …

Experiences Of Formal Caregivers Providing Dementia Care To American Indians, Damon Grew Peter Syphers, C.J. Schumaker, Ronald P. Hudak

Journal of Sustainable Social Change

Alzheimer’s disease (AD) is a significant public health concern for all elders in the United States. It is a particular concern for the American Indian (AI) population, which is one of the fastest aging populations in the United States and the smallest, most underrecognized, and most culturally diverse group in the country. A formal caregiver understanding of AD in the AI population is scarce. This phenomenological study was designed to discern what is known about AD in the AI population by exploring the cultural beliefs and experiences of formal caregivers who provide care for AI dementia patients. Specifically, this study …

Intergenerational Adult Day Services Needs Assessment Project Final Report, University Of Maine School Of Social Work, Eastern Area Agency On Aging, University Of Maine Center On Aging

Maine Center on Aging Research and Evaluation

Focus group research conducted in the Greater Bangor, Maine area in 2016 identified respite services and intergenerational programming as important factors for supporting a more livable community.

This report outlines findings from a 2018 needs assessment of adult day services (ADS), funded by Maine Health Access Foundation. The needs assessment utilized a survey of local caregivers (N=84) and key informant interviews (N=10) with staff at Maine adult day service programs or service providers that could utilize adult day services for their clients.

Key survey findings indicate that lack of financial resources (identified by 20% of the survey sample), and lack …

Application Of The Imb Model To The Reported Intake Of Fruits And Vegetables Of Native American Children, Rachel C. Sinley, Julie A. Albrecht

Journal of Health Disparities Research and Practice

The purpose of this study was to evaluate the applicability of the Information-Motivation-Behavioral Skills (IMB) model to identify variables that are associated with fruit and vegetable intake among Native American children. A cross-sectional study design was employed with a convenience sample of 92 English-speaking caregivers of Native American children between the ages of 2 and 5 from several tribes representing the Midwest, including Omaha, Santee Sioux, Ponca and Winnebago. Caregivers completed an IMB model survey, fruit and vegetable food frequency questionnaire and demographic survey. Multivariate linear regression and path analysis were conducted to assess association between model constructs and fruit …

Care Transitions From Patient And Caregiver Perspectives, Suzanne E. Mitchell, Vivian Laurens, Gabriela M. Weigel, Karen B. Hirschman, Allison M. Scott, Huong Q. Nguyen, Jessica Martin Howard, Lance Laird, Carol Levine, Terry C. Davis, Brianna Gass, Elizabeth Shaid, Jing Li, Mark V. Williams, Brian W. Jack

Communication Faculty Publications

PURPOSE: Despite concerted actions to streamline care transitions, the journey from hospital to home remains hazardous for patients and caregivers. Remarkably little is known about the patient and caregiver experience during care transitions, the services they need, or the outcomes they value. The aims of this study were to (1) describe patient and caregiver experiences during care transitions and (2) characterize patient and caregiver desired outcomes of care transitions and the health services associated with them.

METHODS: We interviewed 138 patients and 110 family caregivers recruited from 6 health networks across the United States. We conducted 34 homogenous focus groups …